blood donation

I thought I'd remembered something about Hodgkin's Disease being on the questionnaire for blood donation, so I thought I'd check out what the American Red Cross web site has to say about it.

[A donor is] acceptable if the cancer was treated with only surgery or radiation, and it has been at least 5 years since treatment was completed with no cancer recurrence. If your cancer was treated with chemotherapy, hormonal therapy or immunotherapy, you are not eligible to donate. If you had leukemia or lymphoma, including Hodgkin's Disease, you are not eligible to donate.

Ever, at all, for the rest of your life? Ouch. So much for that little civic duty. Not that I was really excited about giving blood, but it was easy and painless and I didn't mind doing it since it helps people. I find it sad that I can't do it anymore. :(

pac-mondrian

And now for something comipletely non-cancer-related: Pac-Mondrian! It combines the fun of Pac-Man with the art of Piet Mondrian and all the sounds of a 1940s boogie woogie jam session.

feeling better

Christmas Eve and Christmas were pretty hazy as far as the mental state goes -- and before you make jokes about "how can we tell the difference," when I don't even feel like using my computer, you know something's wrong. ;) I managed to make it through the Christmas Eve service at church, complete with singing, but immediately took a two-hour nap upon arriving home, then got up and wandered around mom & dad's respective gift-wrapping stations, then went to bed.

Sunday was better, and today I'm better still and came to work. The only pain (aside from the cold I had that is still hanging in there) has been these small sores on my tongue, which were alleviated by brushing with water and baking soda. The sores are still hanging around, but only noticeable when I eat.

Speaking of eating, no nausea to report, which is good. I've been trying to snack on crackers and drink plenty of water to keep my stomach from being empty. I was told that foods may taste different and I may like different foods; I should just listen to what my body tells me. So far, nothing has really turned me off, although anything greasy or fried sounds rather unappealing (which may just be a mental thing, but I don't want to take any chances).

My white cell count should be lower 7-10 days after the treatment, so around the middle of this week. Sick people, stay away! (This does not bode well for my plans to attend a friend's New Year's Eve party. *sigh*)

Just to be a little more specific, as I said before I'm doing the standard ABVD treatment rather than the experimental Stanford V method, so I'll be treated every other Wednesday afternoon well into May or June. After that, I'll have 3 weeks of radiation therapy Monday through Friday (quite a drive to be making every day for 3 weeks, especially as each session doesn't last that long; "it'll take you longer to get undressed than for the treatment itself"). Then I should be good to go, although it could take as long as five years to "feel like I did before the chemo."

lethhhhhhhhhhhhhargy

Still no nausea or anything like that, but today the lethargy hit. It's not like I'm "tired" really, just more of a mental daze; my mind is moving slowly (more so than usual) and I'd be perfectly content to just stare at the wall all day. But if that's the worst I have to complain about, I'm doing pretty good.

My throat is still a little clogged from the cold, but I think it will be clear enough tonight that I can sing at church (we just started a male quartet, and tonight is our first performance, plus, I'm in the choir). I'll be able to sing, my voice just may not sound as nice as it did last week.

nothin'

Just a quick note to say that I still feel the same. Never got the fever (not everyone does, but it's predicted), no nausea, ate breakfast this morning just fine. I do seem a little more sensative to smell, but that may just be the cold clearing up. I'm also a little thirstier, but I'm supposed to drink more water anyway.

Work was canceled today! I wasn't sure if I wanted to go in anyway, just in case something did happen and I would feel better being at home feeling sick than at work, so the multiple inches of snow kinda sealed the deal. Then one of our guys called and said no one else is coming in either. Hurrah!

long farkin' day

There was a lot of waiting. We didn't "start" the chemo until 3:15, and even that was just testing my reaction to the drugs; I didn't get the full dose until 4:40, thus leaving the Clinic at 7:40. Driving was slow due to the snow, then we stopped at Avon Commons for some gift cards (Christmas shopping), Sam's Club for gas, and CVS for anti-nausea medicine. We got home just before 10:00 and ate a bit of dinner at 10:30 (all we had had was sandwiches while driving to the Clinic and soup and crackers while I was doing the chemo). So, it's been a very long day.

The procedure itself was fine. I felt perfectly normal, and still do now. The room had a small TV/VCR, so I watched How The Grinch Stole Christmas (I wasn't sure if they would have a VCR or DVD, so I brought that on VHS as well as a DVD of A Charlie Brown Christmas just in case). I should be getting a fever tonight, as is typical. The nurse suggested I take one of the anti-nausea meds before going to bed, as the lack of food overnight can cause nausea in the morning, and it's better to take it at the first sign of queasiness--e.g. if the thought, smell, or taste of food makes me queasy. I warned work that I may not be in tomorrow, since I won't really know until I wake up whether I will feel like going in (I also brought some easy stuff home with me to work on, if I want to put a few hours in from home).

Just like every visit, there was a lot of information dispensed today, such as:

• I may just have thinned hair, rather than losing hair. This should start in 3-4 weeks.
  
• Low white blood cell count won't happen for a week yet.
  
• Foods may taste different.
  
• To help avoid nausea, it's best to spread eating out across the day, rather than cramming everything into 3 meals.
  
• Also to help avoid nausea but also just to stay healthy, I should only have fats, sweets, and alcohol rarely (also smoking but I don't smoke, so that's easy). They gave me a little booklet with tips on what to eat during chemo, emphasizing high-protein recipes and ways to increase the flavor of foods, as things will have less or different flavor (e.g. an orange would be good as is, but chicken should be marinated in something flavorful such as Italian dressing). The idea is to figure out what foods appeal to your body so you know what you're able to eat, to make sure eating doesn't become a negative mentally.
  
• The Q. Public's image of the cancer patient praying to the porcelain god and getting ridiculously thin is no longer accurate, thanks to anti-nausea medicines. Now, people doing chemo actually tend to gain some weight.
  
• Dryness: I may need to use hand lotion more, may not need to use anti-oily shampoo for my hair, may need to use eyedrops more for contact lenses, and {drum roll plz} acne may go away. w00t!
  
• Lots of other stuff but these are the ones off the top of my head.

I'll take this opportunity to mention that everyone I've met and dealt with at the Cleveland Clinic has been extremely friendly and informative and helpful (excluding my dad's run-in with a receptionist during my biopsy). That, along with the notion that there are no stupid questions and the patient is also not stupid, goes a long way to making me feel at ease.

abvd

(ABVD being the chemotherapy I'll be getting)

I just got a call from the nurse who's handling the clinical trial, and after the randomization, I've been selected to be part of the control group. That means I'll be getting the traditional ABVD treatment for 6-8 months, with 3 weeks of radiation therapy after that.

Unfortunately, I've had some cold symptoms over the weekend, although I started taking Cold Eeze right away and it hasn't been bad yet -- just some sinus stuff (it may even be some sort of winter-spawned allergy, but I'm pretty sure it's a cold). Since I'm meeting with the oncologist at 1:00 Wednesday anyway, the nurse scheduled me to have a blood draw at 12:30 to make sure I'm okay to start the chemo afterward (1:45).

I also had a more specific talk with my boss about the work situation, and he's been very supportive and cooperative. Since it's winter, and just about everyone here is riddled with disease, or has children who probably are, he said it's okay if I need to stay home (I can work from home pretty easily, especially since I use my own laptop at work anyway). We also don't know yet how my body will react to the chemo as far as lethargy and other side effects, so there may be days when I just need to stay home and not work at all. He said even if I get backlogged and we need to bring in someone to help out on a project, that's fine. We'll see. Whatever happens, he said he just don't want me to be worrying about losing my job or anything.

chemo starts wednesday

My first chemotherapy session is Wednesday, but we won't know until Monday or Tuesday whether I'm doing the standard or the Stanford treatment (I agreed to be part of the trial, but as I explained before, some people are put in the experimental group while others are put in the control group).

I sort of skirted over the negative effects of the chemo before and just said "drugs drugs drugs." I mean, that's basically it: there are drugs for just about every side effect. But still, I have to be aware of the (numerous and multitudinous) side effects and symptoms so I can alert my doctor when they happen. If I start coughing, I have to call. Everything is to be taken seriously; no "wait and see if it goes away." So while most of the side effects of the chemo can be relieved with drugs, it still won't be a cakewalk. Well, maybe if I listen to some ragtime music it will be.

some more info

As I've talked to people, more questions come up, so I thought I'd answer some of them here.

1) How long has the chest mass been there? And how does it fit?
The doc said there's no way to know for sure, but he'd guess about a year. It doesn't really "fit"... it's encroaching on the left lung's territory. This means I can't take in as much air as before, but probably not enough of a difference to notice (which I haven't).

2) Were there other symptoms before that you didn't notice or thought were nothing?
Usually with Hodgkin's, the person discovers it by chance with the lump on the neck (with guys, usually while shaving, as I did).

3) What happens if the chemo doesn't work?
Well, as I mentioned below, there is stronger chemo they can use if the regular regimen doesn't take. Failing that, a bone marrow transplant (stem cell transplant) would be in order, either from myself if possible, or from a donor. But don't get your knickers all in a twist yet; remember, that's only if the first round of chemo (6-8 months) doesn't do the job, which it usually does.

4) The chemo will affect your immune system, right?
Yeah, I have to be more careful about being around people with disease, especially as we're heading into winter. I've always washed my hands fairly regularly (earning mockery amongst my greasy unwashed male friends in college), so that shouldn't be a problem. The nurse also recommended I use hand sanitizer (e.g. Purell) for times when I don't have access to soap & water. But I'll have to make a concerted effort to stop chewing on my fingers. That will be hard, as I usually don't realize I'm doing it. And while we're on the topic of the immune system, I received one of the rare and precious flu shots yesterday.

Just FYI, if you're coming into this blog late or want to refer back to the beginning of this adventure, click on "November 2004" in the Archive section of the gray column at the right.

results of today's visit

Sorry for the late post everyone; we didn't get home from the Cleveland Clinic until 6:00, and I've been talking to various people on the phone and typing this lengthy blog entry since then. I can see from the counter at the bottom of my blog that I've had about 40 unique visitors today, so let's get on with it already:

They confirmed it was Hodgkin's Disease, and it wasn't found anywhere else in the body. That also means I won't need the bone marrow test again. HOORAY. The oncologist said, "and apparently your Hodgkin's has been reading the textbook, because it's been doing everything we'd expect Hodgkin's to do, so it will probably continue reading the textbook."

The traditional method of chemo is 4 different drugs, with two administered one week, then the other two administered two weeks later (intravenously), so one month for a full "cycle" of the drugs. It takes about 3 hours per session. But after the 6 months, I'd also need radiation therapy every DAY for 3 weeks. With this method, 85% of Hodgkin's cases are "cured", i.e. the person never has it again. If it doesn't go away after that, they try another round of stronger drugs, but most people don't need the stronger drugs, that's why they use the other ones first.

But the Cleveland Clinic is also taking part in a clinical trial for Stanford University on a method that uses the same drugs, but administered once a week instead of every other week, and in conjunction with some other drugs. Thus, it only takes 3 months instead of 6 (radiation therapy would probably be the same though). There's not much "risk" with the Stanford trial really -- they want 600 people to take part in the trial, and have had about 500 so far. And so far it's been working as well as the traditional chemo method (uses the same drugs, after all), but if it does indeed work as well or better than the traditional method, the advantage is that you only go through chemo for 3 months instead of 6. Also, weeks 1 and 3 are 3-hour sessions (like traditional), but weeks 2 and 4 are only 1-hour. Actually, when you agree to do the trial, there's a 50/50 chance of being in the variable group (Stanford) or the control group (traditional), so even if I consent I may not get the Stanford method.

The doctor said we could get the chemo done anywhere (e.g. Elyria), but he can't tell other doctors what to do. I'll meet with him once a month to check on my progress, and he can recommend things, but he can't actually tell the doctor "do this"... so, we're just going to stick with driving into Cleveland. We're very fortunate to live as close to the Cleveland Clinic as we do, even if it means about an hour of travel there and back.

Also, if I run out of vacation days at work, I'm still protected under the Family and Medical Leave Act of 1993. There's also a Leukemia & Lymphoma Society, which can help out with transportation/parking fees, paying for drugs, and other costs. However, it's based on financial need, so this may not apply to us, since my insurance is pretty good (according to the policy manual, anyway). Still, it's nice to know that such a society exists.

I have to read through and sign (or not sign) the consent form for the clinical trial, then call the nurse who's handling the study to let her know yes or no, then she'll get me scheduled for my first chemo session. People react differently to the drugs; some people lose all their body hair, others just head hair, others just have thinned hair. On the plus side, I probably won't have to shave. :) Another positive: other than the lethargy and driving into Cleveland every other week, this really shouldn't affect my normal routine -- which is what I had heard about other Hodgkin's cases. On the minus side, I will probably be lethargic for several days after each chemo session. And really, typically that's the only negative. Nausea generally isn't a problem, because it can be prevented with drugs. Drugs drugs drugs.

still here

Just so people know I still exist, I thought I'd post a quick entry just to let you know nothing's changed. No pain or soreness now, I was able to remove any and all bandages yesterday and take a full shower. To recap: PET Scan on Tuesday, chest X-ray and meeting with doctors on Wednesday, hopefully with some answers. I expect them to say Hodgkin's Disease; the only surprise would be if they say it was detected elsewhere and/or it's some other cancer.

And now for some good news: I just found out Friday that, because Christmas and New Year's are on Saturdays, our paid holidays at work will be Christmas Eve and New Year's Eve. I'm somewhat indifferent to having those days off work, although it is nice; I care more about the day *after* Christmas, because I hate going to bed early on a holiday, especially one as busy as Christmas. But this year, the 26th is on a Sunday so that's not a problem.

I also discovered that Target's (that's right: "Target's," just like "Kroger's" or "Wal*Mart's") sells candy canes in various candy flavors now, including Jelly Belly, Spree, Gobstopper, and Sour Patch, all of which I bought tonight. All good except the Sour Patch ones, which were hardly sour at all and tasted more like cherry cough syrup. Still, when it comes to a festive holiday breathsaver or a hot cocoa stirrer, nothing beats a good old-fashioned Spangler® peppermint candy cane.

This concludes my review of the local candy cane market.

much better

Feeling a LOT better this morning. No more "twinge" in the hip, just a bit of a soreness when I walk. No big deal.

um, ow

Lung test? No problem. Blood test? Done it a million times. Echocardiogram? Meh, not too bad. Bone marrow biopsy? !@#$%&*!@#$%&*

Well, not really. It happened too quickly and hurt too much to really choose any words; it was really more of an AHNNNGG. That WebMD page I linked below describing the procedure was very accurate. NOT fun. I could certainly live my life with never having a bone marrow biopsy again. Yeesh. Walking creates some twinging back where she stuck the needle in (two spots on my lower back, in the hip bone), but it's not really a *major* pain. Unfortunately, there's also a mental component to this, as I tend to think back to the procedure when I feel the twinge.

And yes, it was an ECHOcardiogram, not ELECTROcardiogram as I misheard the other day. All of the stuff today was to see if the cancer is anywhere else. We'll know the results of all this on Wednesday. I'm expecting them to say Hodgkin's disease; the only surprise will come if they say they found it somewhere else. Finding it somewhere else would be the difference between Stage II and Stage III, and although I don't really know the difference between them, I know that Stage II is better. :)

The bone marrow biopsy put a big dent in the upbeat demeanor I've had so far. I'm glad my dad was there with me. (This really was the first true pain of this whole adventure; I know everyone was praying and sending mojo for Tuesday's biopsy, but heck, I was asleep for all that. Today was hard to bear.)

Tuesday: PET Scan (also a dentist appointment in the morning, but that's just a regular checkup)
Wednesday: Chest X-Ray again, meeting with doctor who did the neck biopsy, then meeting with the oncologist

yet more tests

My dad called the oncologist's office, as explained below, and they said I don't need to fast for the blood test, which is good since we have time for a lunch break in the schedule. They're going to check if last week's EKG is sufficient and let us know when we're there (it's the last item of the day, so that would mean getting home earlier).

They also mentioned that the appointment had been set for the PET Scan. Oh yeah, forgot she told me about that yesterday... I think. Anyway, that's Tuesday at noon.

Thu Dec 2: lung test, blood test, bone marrow biopsy, EKG (?)
Tue Dec 7: PET Scan
Wed Dec 8: meet with oncologist, hopefully set a plan for treatment